Living with HIV also means living with a stigma. Pham Thi Hue has gone out of her way to change attitudes towards the 250,000 people who have been infected in Vietnam. Words by Eduardo Culbeaux

 

One of the first women to speak out about the HIV/AIDS crisis when the social stigma was at its highest, Pham Thi Hue is a trailblazer for HIV/AIDS advocacy in Vietnam.

 

Her story starts in 2001 when she learnt she was HIV-positive — it was a time when many still thought AIDS was an airborne disease. When she gave birth to her child she was immediately quarantined, and left to clean her own surgical wounds.

 

Afterwards, her husband’s family kicked them all out of the house because she was HIV-positive. The pattern was repeated every time a new landlord learned about their infection. When Hue’s child was three months old, Hue and her husband contemplated a family suicide. The shame, isolation and shunning had just become too much. Her child’s sudden burst of tears woke her from that state of mind, and she developed the urge to fight for their survival.

 

In 2004, her son made news because he was being discriminated against by his school — born though Caesarean section, he isn’t HIV-positive. Yet most schools would not admit him, and if they did they would not allow him to play with other children. Later in 2004 Hue was voted an Asian Hero by Time magazine’s Asia edition. Since 2007, Vietnamese laws have changed and now discrimination in hospitals and schools is illegal, although Hue assures me it still happens, just not as overtly.

 

She still sees her work as far from being done. When I had an opportunity to speak with her, we didn’t dwell on the past. Instead she was very eager to tell me about what problems she still sees and what projects she has coming up.

 

Budgeting Crisis

 

The Joint United Nations Programme on HIV/AIDS (UNAIDS) estimates that there are 250,000 people living with HIV in Vietnam. Vietnam became the first country in Asia to commit to the new HIV treatment targets. The goal by 2030 is that 90% of people living with HIV will know their status; 90% of people who know their status are on HIV treatment; and 90% of people on treatment will have undetectable levels of HIV in their body. The problem is, as Vietnam’s economy grows, external funding for many NGOs is being cut.

 

“Many NGOs are ending their support for Vietnam in 2017 and 2018, so it raises a big question about what Vietnam will do in the future,” says Hue. “In many different provinces, the people that are taking care of HIV communication are panicked. They don’t know where to go, how to continue their activities, and how to raise the money for them to do different things.”

 

Also, although Vietnam signed the UNAIDS target contract, the UN won’t provide additional funds. This is especially troubling if you live in a rural area.

 

“In the countryside, discrimination is very high,” she explains. “It depends on the person who leads the area or the province. If they care about this programme then they educate people about it, but in some areas people don’t care about AIDS. They leave issues like discrimination alone, so it is much harder there than in the city.”

 

Being Proactive about Safety

 

Vietnamese people’s knowledge about HIV/AIDS has come a long way in the past 15 years. But even when people are fully informed about transmission methods and dangers, according to Hue there still remains a disconnect between people knowing about HIV and applying those lessons to their personal life.

 

“When we ask people, they know how to be safe from HIV, by remembering to use a condom,” Hue says. “People hear about it and know about it, but they still don’t protect themselves.”

 

Another issue around safety is childbirth, Hue says.

 

“Many HIV-positive women want to have children,” she says. “If they knew that they can give birth without affecting the baby, they could prevent their baby from being born HIV-positive. But since each province has its own concerns, some HIV-positive women still have a baby without knowing they could have stopped [the transmission of HIV to the child].”

 

She adds: “Vietnamese people need to be active in protecting themselves, instead of waiting for people to go and educate them.”

 

The Future

 

HIV-positive mothers giving birth has created a new problem, that of HIV-positive orphans, of whom there are a growing number.

 

“Many HIV-positive kids are orphans because their parents passed away. They get brought up in an orphanage for HIV kids, and they are there until they are 18,” says Hue. “When they are adults the shelter gives them back to the community but they don’t teach them how to earn money or how to make friends. These 18-year-olds come back to society and make big trouble. They don’t know how to act in a society that is not welcoming.”

 

This is the issue that Hue is focusing on these days — her organisation, Hoa Phuong Do (Flamboyant Flower Group) is looking to help HIV-positive orphans. She is presently seeking new avenues of financial support as resources are starting to dwindle.

 

Vietnamese news organization Thanh Nien recently reported that all major external funding for HIV will be cut off by 2017. A recent story also claims that 60 percent of HIV-positive people in Vietnam don’t have health insurance. This means there is a high chance that they will give up on their anti-retroviral treatment when it becomes too expensive.

 

Anti-retroviral treatment costs around VND3 million to VND24 million (US$136 to US$1,100) a year per person, and health insurance covers 80 percent to 95 percent of it.

 

Pham Thi Hue’s organisation Hoa Phuong Do is taking part in a unique new programme this summer in Hai Phong: a Leadership, Sports and Mentoring Programme for LGBTQ Youth and Children Living with or Displaced by HIV/AIDS. To find out more about the programme click on http://wordvietnam.com/news-latest/briefings/on-the-margins. And for more information on Hoa Phuong Do, email This email address is being protected from spambots. You need JavaScript enabled to view it.

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